norcalmom

So I'm thinking who would apply for something like this - and my thought is IVIG manufacturers...like Talecris Biotherapeutics, Inc. - the manufacturers of Gamunex.

Resourses to help all of us.. But the big error was - that RARE disease resources start at less than 4000 in the US per year...not 200 (got that from some other defination of "rare"). so maybe someone in this program can help us... "The Humanitarian Use Device (HUD) program designates a device that is intended to benefit patients by treating or diagnosing a disease or condition that affects fewer than 4,000 individuals in the United States per year as per 21 CFR 814.3(n). " Designating Humanitarian Use Devices (HUDS) The Humanitarian Use Device or HUD program was established in 1990 with passage of the Safe Medical Devices Act and creates an alternative pathway for getting market approval for medical devices that may help people with rare diseases or conditions. As defined by 21 CFR 814.3(n), a HUD is a “medical device intended to benefit patients in the treatment or diagnosis of a disease or condition that affects or is manifested in fewer than 4,000 individuals in the United States per year.” In order to obtain HUD designation, the applicant must provide authoritative references to demonstrate that the device meets the definition of 21 CFR 814.3(n). In addition to the documentation describing the disease or condition, the applicant must also provide the proposed indications for use of the device, and the reasons why such a device is needed for the patient population. One aspect that has becoming increasingly difficult is if the HUD is proposed for an indication that represents a subset of a common disease or condition. In these situations, the applicant must demonstrate that the subset is a medically plausible patient population. A medically plausible subset is considered a regulatory concept where an aspect of the HUD precludes its use in the entire disease or condition. A medically plausible subset is not a readily identifiable subset or a group of patients who meet or do not meet the inclusion and exclusion criteria for a clinical study. Likewise, they are not patients with an unmet medical need. If the HUD application is designated, the applicant can then submit the HDE marketing application to the Center for Devices and Radiological Health (CDRH) for marketing review.

"The ability of a pharmaceutic company to fund research is limited to developing a new drug that may treat an illness " (quote by Allergan exec to Beth Maloney at recent symposium) But - What about the ability to research the imapct of an existing drug on a new audience? I'm assuming that they would be interesting in expanding their sales - so if antibioics or IVIG works for pandas kids - why wouldn't they be researching it? I've been thinking about it for a while. I attended a IDC forum at Stanford for patients with primary immune deficiency or with common variable immune deficiency a couple of weeks ago. I think that there are several resources we've not considered in getting pandas awareness going. We tend to focus on the parents and the primary physicians / specialist - but there are other influencers that may be more effective like: Manufacturers of IVIG, since a hand full of clients means big $ for them, may want to help put some pressure on the insurance providers....anyone have any expertise in this area of work, or connections with the companies that make the drugs...I know they have resources for paitients and working with insurance for that were talked about at that IDF meeting. And What about existing Autoimmune and Rare Disease Resources? The IDF - Immune Def. Foundation the American Autoimmune Related Disease Association http://www.aarda.org/mission_statement.php National Coalition of Autoimmune Patient Groups http://www.aarda.org/issue_display.php?ID=12 Link to phone # for advocay resources http://autoimmunefoundation.org National Organization for Rare Disorders (and yes - pandas is a rare disease if no more than 200 NEW cases per year occur..as far as I know ...that is the case - as much as we "see" it everywhere, until docs DX less than 200 cases last year - then for the time being we may be able to get help from this group and this status helps in getting insurance approval for drugs, and it also helps the pharma companies that have "rare" drug staus drugs get extentions on patents, and other financial incentives from FDA and gov to work on rare stuff (because there's not alot of return on this investment) http://www.rarediseases.org/patients-and-families IVIG is on the ORPHAN Drug list already (for one or two disorders only). If we can get a designation and get on that list that the FDA approves (not the insurance providers) than the insurance providers cannot reject out claims . At least thats how I think it works...more reserach necessary..not that getting FDA to recognize us would be easy, but they do have resources for rare diseases. Getting on the Orphan drug list is a big deal but maybe being added as a disorder treatable by a drug already on the Orphan Drug list would be easier. that's just from 3 minutes of brainstorming. Lets make a list and identify who most likely to have influence and affintiy for pandas. Then we can start contacting them on a more formal basis. If some people want to join in helping me - it would make the process go much faster! We may only find a couple that are a fit, but its worth a few emails and calls. AND - Anyone in the DC area that may be interested in any of this or have some connections?? - there is an upcoming meeting on OCT 12 in DC - I don't think its for us, but the folks there may know more about who can help us. More info on that event here: http://www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/default.htm

"the ability of a pharmaceutic company to fund research is limited to developing a new drug that may treat an illness " But - What about the ability to research the imapct of an existing drug on a new audience? I'm assuming that they would be interesting in expanding their sales - so if antibioics or IVIG works for pandas kids - why wouldn't they be researching it? So, Alleran may not be the company we need to talk to - but I don't see why resources at the big manufacturers of (esspeically of IVIG, since a hand full of clients means big $ for them) can't put some pressure on the insurance providers....anyone have any expertise in this area of work, or connections with the companies that make the drugs... I'm going to tart another thread on this.

Does your child have lung infection with unclear breathing sounds? There are two ways mycoP can go - just into your lungs (tyrpical walking pneumonia that can be detected early and treated) and chronic - a typical presentation - not in your lungs. If IgG is elevated and does not come down, or continues to rise - you have an active infection - regardless of negative chest Xray or IgM. So - some of it can be detected, but sometimes not. If you have IgM - you have myco P, no need for chest Xray, unless problems with lungs and IgM does not come down with antibiotics (as far as I know). Does your child has these problems? If so, get the X ray...if you doc thinks you need it.

I think I can say without getting anyone in trouble that the majority of presentations were on other autoimmune diseases. From the pandas folks - only new material I saw that could be related to pandas in the shorter term was from Drittan, the host of the seminar, and his info is not specifically related to panadas - but uses his technology to show the BBB of mice after strep infections. He mainly researches stroke, and got drawn into the are of pandas due to the BBB aspect of it (becuase he has ways to actully look at it in live mice). Here is a page on him. In terms of research, he's just starting on pandas. Some of these people work their whole lives on one piece of a puzzle to see it if they can solve it and what it might mean in a bigger picture in terms of health. http://devcell.bio.uci.edu/faculty/dritan-agalliu/ So short tem - nothing new for the majority of the pandas population that I saw. I feel like we were extremely privileged to be there. Even though there were many of the top MS reserachers presented - the invitation was not open to MS patients. The most AMAZING (not that it isn't all amazing) work was presented on a peptide that can block a very specific channel that "over produces bad stuff"(my technical translation) in certain autoimmune disease. About to start human trials in Helsinki Oct 8th. They are starting with MS. But works with a number of other diseases like RA too. Not all, but some. He said he'd test some pandas kids blood for levels of the "bad stuff" and if channel blocking might be appropriate for our group....if a pandas person there gets him some samples - I really hope Dr C was int he room when he said that, a simple communication like that can change the entire game sometimes. The name is George Chandy. Human trials in Helsinki bcs FDA taking way too long - US stuff will happen, but Europe is quicker so they are starting there. 30 years he's worked on this, and the route to where he is should this work in humans the way it does in mice and primates, was serendipitous to say the least. Fortune favors the bold - and the persistent! ITs effect in MS is incredible - because MS paralyzied mice can get up and walk around after taking it bcs the myelin will rebuild itself in many cases.(I think that is mostly true statement...again my translation). here is a press release on that: http://www.sbir.gov/sbirsearch/detail/6533 Cunninghams going to be publishing some papers...no date given, no surprise, didn't share what on other than one study will inculde information from the hundreds of blood samples she took over the years and ran her tests on. Her lab hopes to open early in 2013. Its clear to me that we need to move away from arguing about what causes our kids condition. Like the other autoimmune diseases - first we need to prove it is a disease. Diseases get stuff - like special status with FDA and funding for Rare Diseases research and drug insurance special status etc....so proving it has specific autiommune markers (cunningham's research) and that it has physical proof of attacking a physical organ (agalliu's research, although he's not researching pandas - just strep infected mice at the moment) is really, really important for us. Also - most autoimmune diseases don't know the cause. I had a minor autoimmune thing that happened to me and the docs said - well, in 50% of the cases we know this is relaed to Lupus, Hep C or exposure to amalgam fillings....so they had to test me for Lupus and Hep C to rule them out. But that doesn't mean they didn't treat me!! Because - in 50% of the cases - they had no idea what casues the condition. There is however a test for it, and a very specific autimmune marker for it. But cause? most of the time - they can't track that down. But with a test and a treatment - frankly I didn't care what the cause was (well, unless it was lupus or hep C...) because it didn't matter. And in alot of cases we dont' find strep in our kids, and on top of that - strep is everywhere - so proving the casue is hard hard hard... Hopefully soon we will minimally have a test - and the docs can run that test (cunninghams) use that info to then say - well, in 50% of the cases we thing this is caused by strep - and minimally treat the inciting cause of strep, and maximumly treat the autoimmune sequela. And hopefully, along the way - they will pick up on the other things like mycoplasma and other infections that may be underlying. Just having a test - gives pandas credibility in doctors eyes. Pediatricians can perscribe antibiotics and check for infections that are statistically liked to her tests. It lowers their risk of doing something wrong or without something solid to base decision upon. I left feeling mad at our medical system, but hopeful that the dedicated, persistent, scientists on our side will prevail.

ABSOLUTELY get the lydcocaine (or whatever brand of cream your doc will prescribe) - do BOTH arms - a good thick amount of the stuff - at least 30 minutes prior to the draw. About a 3 " diameter circle. Takes that long to work. Also, you may ask your doc for some kind of med to deal with the stress of that one day (for you!!) (no -seriously - when we went in for IVIG I got pych to give us single doses of clonazapam? - somehting like that - not for me, that was a joke, although probably would have been a good idea since I'm sure DS feeds off my stress of anticipating his behavior). I've even considered asking to get a a does when him when we TELL him he needs to get a draw done. We tell him a day or two before - because the worst thing in his mind is a "surprise" blood draw! Also, try to take him when the lab is not very busy so you aren't in agony in the waiting room. DS no longer has this fear. But it was pretty bad for a couple years. Only got over it when he had a couple in a row that weren't so bad - because of the lydocaine, and using the same person that did the draw the last time - at the same lab. He likes some control over the siutaiona and what to expect. We had a bad one once when we did one arm - and they couldn't get a vein, and had to do the other arm - which was not numb - and also had trouble finding vein. He had a fear prior to that, ...but after that day with - 3 nurses and me in room with him freaking out for 20 minutes - it got pretty bad. He was 12 at the time - almost as big as me, about 5-6 and 125 lbs - He had to have a couple that "weren't so bad" before he started to recover from this fear. And, get every test you even think you may need for the next 3 years!! Good luck.

There is an old thread that references an article on the differnt things that help with gut issues - and saccharomyces boulardi - mentioned above is in it. I now look for this ingredient in probiotics we use, because it is helpful with common gut issues that arise when on antibiotics - like C-diff. I don't know if it is strong enough to treat actual infection, but you could research that.

DS was tested a couple dif time for zinc - first made my radar with a below normal range of 8.6 (9-14.7) This was RBC test. Then I wanted to look further into it -- bcs at the time was wondering if DS could have celiacs (in which case you aren't absorbing enough minerals and may result ins ome being low) and the RBC was 11.3 (9-14.7) and the PLASMA zinc - which is a different measure of absorbtion was 74 ( 25-148) I was told that especially with kids - these levels fluctuate a lot daily. So, getting another test, and getting the plasma test vs the RBC version will give better picture of what situation is.

A recent test we did showed high levels of Kryptopyrrols in DS urine. This condition can cause low amounts of B6 and zinc and other nutrients. I'm just starting to look into it. In doing that I came across some information that ties into the supplements and vitamins that are commonly noted when talking about brain function. (GABA, Sam-e, trytophan, zinc, B-vitamins, copper levels, etc...) I came across a very interesting Dr - Ph.D "doctor" -that researches nutrients and behaviors. Check out the presentation under "Depression" - you have to download the preso.. He also has a bunch of videos (but they aren't really detailed - the presenation is more detailed). I only looked at one preso, but watched most of the videos. He says there are several groups you can break people into, and that various tests will help you figure out what group you are probably in. Strategies for each group are VERY different (sometimes opposite). And many of the diagnostic clues are tests, you may have already done on you kids. Its not perfect, there is some overlap. http://www.walshinstitute.org/MedicalConditions.asp# I've neen thinking about this ever since we started a very low does SSRI - we never ramped it up, just left him at the very, very low does. Didn't see much improvement (if any) - but given that many pandas kids recact badly to it, that has kept me from increasing, as we'll as don't really think this will be a magic bullet for him and may just mask what is going on in his immune system and other stuff we try to figure out what is really going on. At the IOCDF meeting I went to a presentation on neurotransmitters. My take away was that we don't know what most (if any) of these REALLY do. Don't know if they are causal, or a bi-produt of something else. Various symptoms are linked to having too much - and many of those symptoms are linked to having too little. Some are merely "regulators" ..They regulate the other ones...but all the research seemed very very early. DS has had a number of the tests on Dr Walsh's site over the years (like B-12,and zinc), and even the fact that many are in normal range, can help determine what group you belong to and therefore what supplements may work better in your case. My interest in this is twofold - since DS is on long term antibitoics, and I know that it is bad for his gut, and we know the gut is large part of the immune system, I want to do what I can to keep it healthy through out this process. It also beats just trying out various supplements and vitamins randomly to see if they work, or have poor outcome, or no outcome (and even figuring out IF it was the supplement - to determine efficacy of on one kid that has a host of various exposures over a few months time cannot be done with any certainty).

I don't know if you've ever had, or would consider, IVIG to complement your Lyme treatment. It may help get you through this difficult period (with or without CBT). I know our LLMD was not oppossed to my DS doing IVIG during/as part of his treatment - since we were dealing with pandas as well as lyme. They are not mutually exclusive.

What tests are these docs using to confirm pos coxsackies? IgM - fine I get that. BUT- If only IgG then from what I have read the ELISA test can't tell you much - and KIDS IgG should be high for IgG. 80% of the population has had it and has an IgG titer.Which takes al long time to go down YEARS- and since you normal get this as a kid, theirs are higher (I don't know how high - I'v e been looking for an age chart for this and for HHV6 - because again - it should be positive as most people have had it), but how high is too high s the question. I've read that an adult HHV 6 is questionable for chronic fatique dx if above 5.0. But what should a child's be since they had is much more recently? Does anyone have these charts? Here is what I read on the Focus testing site. I think as noted below - the first test is only a base line, and if its high - you should retest in a few weeks to see if it has changed dramatically. Four fold change is what they are looking for. _________________________________________________ Coxsackie A Antibodies (Serum) Panel currently includes testing against A-2, 4, 7, 9, 10 and 16 antigens. Although there is crossreactivity among the enteroviruses by CF, most healthy people do not have titers >=1:8. Therefore, detectable titers, especially those >=1:32, should be considered a positive identification. Confirmation is made by demonstration of a four-fold change in titers between acute and convalescent sera. See Unit Code 4401 for parallel testing.

This was my fear when the new PANS paper was written. Dropping Tics - is a political decision - not a medical one. Swedo said - and I QUOTE (well, from memory) at the IOCDF meeting a few months ago - "Julie Rappaport TOLD me that including the group of ticcers would cause problems and push back from the tourettes folks. I should have listened to her her then and avoided all this "controversy" - but - being a young person and knowing that if I didn't include the tickers that I would be leaving out ONE THIRD of the kids- I included them -against her advice. And now here I am having to redo the study without the tics group so many years later" . I'm really glad she included them because that is the primary symptom my son presented with, and how I found out about pandas. Leckman wrote the PANS paper with Swedo. He's the one at Yale. Unless there is another L doctor there (there may be). Leckman is also writting the new pandas study with Swedo. But he also wrote this paper: http://www.tsplusblog.com/2011/01/new-research-calls-connection-between-strep-infections-and-tics-and-obsessive-compulsive-symptoms-into-question/ . I'm not sure exactly where he stands on thing exactly. I'd just be aware of the above, and I'd personally exhaust the pandas dx before accepting a tourettes dx. Tourettes isn't a diagnosis. It a name for a symptom. Kids been ticcing, and we don't know why. Well, in some kids we DO know why. Its pandas. Pandas is not the dx of exclusion - tourettes is the dx of exclusion. And you have some options if you are in the pandas group to get at the cause of the ticcing. It isn't easy or as straight forward as it should be, but if your doctor is telling you he can't have pandas becasue he doesn't have OCD - he's wrong. Does you child ONLY have tics - an NO other symptoms? Bedwetting, insomnia, fears that are out of the ordinary, asks alot of reassurance question?, extreme moodiness or irritability, rage, increase in day time urination? ITs really hard to tell what is "normal" for a 4 year old. I think the most common ones in kids your child's age were a night time disturbance (new bed wetting in a child that had been dry OR insomnia/nightmares) and separation anxiety. IF you child ONLY tics - and everything else is complely normal (all labs were negative) - and nothing changes when they get a cold - the tics don't increase dramatically and there are not other symptoms...and antibiotics didn't help..then maybe your Dr L is right. But, if not, perhaps another opinion as suggested above !

I'm from there. Now in ca. But, I did see that Dr Louise Kiessling, one of the orignial pandas researchers and advocates is from Brown, and practices in RI (Pawtucket or North Kingston I think). I think she is older - but definately worth a phone call or meeting with. Here is a thread that talks about her a bit: http://www.latitudes.org/forums/index.php?showtopic=8904

I would also be aware that this could act more like a drug for your child than a supplement. I'm pretty sure we had major melt down when DS missed 3 days in a row. DS had a major depressive/mood liability (crying in closet for hours- I can't even remeber what it was over - but it was so minor - it was like he was 2 years old and having a tantrum only worse. He's 13..so NOT normal) and when I asked my husband (who had been in charge of pills for a day or two, and I realized that I had also been remiss with this one - because I thought of it more like a vitamin than anything) . So while it may take a while to see the positive effects (like an SSRI) it may only take a few days of missing it. And - I'm not even sure I've seen possivte effects from it - I just give him 1200mg/ per day, because the stuff actually looks GOOD for you. Esp antiinflamatory aspects. And good for your liver (as opposed to Advil - antiflamatory bad for you liver...) I don't know this for sure, as usual there are always other factors at play. Has anyone else has any experience with this? After taking NAC for some time then going with out for 3 days or more - did it cause problems?

I think you've coined a new term. Cherish all your "potato moments"! I'm so happy you are making progress, and thank for sharing you moment and the treatments you've been using to reach it.

Here is a great summary on NAC from Journal of Psychiatry and Neuroscience. NAC does a number of things - and they are not sure which of the things it does is effecting changes in those with Trich. and OCD. Thsi summary lists a bunch of the studies done to date in each area. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044191/

I had an electric engineer come to our home and measure EMFs - Electtical, Magnetic and Radio Frequencies (RF is wireless). He said about half of his business is Lyme patients. Klinghardt is big on eliminating or lowering these fields, but I think they are in the news enough that everyone is at least aware that there may be some health issues associated with them at certain levers (but no one can determine the levels, or what issues they are definitely linked to). WHO release a cautionary statement on it last -spring(?). I did a very quick search to print some stuff for DH - who is REALLY the person I had the engineer coming for. I was pretty sure I cold easily implement with very little impact to our lives - what should be done as precaution - but DH is in the technology industry and is a geek that likes his gear, so calling in someone that he can talk to (since when I say the exact same thing it doesn't count for some reason!) was the way to go. Here is a study that came up when searching EMF and immune system - http://www.ncbi.nlm.nih.gov/pubmed/6611321 The levels tests - according to the abstract - are LOWER that the published safety standards. For RF - Wireless - Here's what we learned for our home - our wireless router - easiest solution is to turn it off at night. Also - we are moving it away from DS's shared wall with my DH's office. We are mainly wired, so we don't use the wireless much (DH switched this all back to wired after getting tiered of doing the tech support for printing and other issues for the 4 computers in the house). Move any phone base station to a room or area in the house that is at least 10 feet from where you often sit or sleep. The base station for Cordless home phone is always ON. It is always emitting signals. Unlike cell phones - because the cell phone manufacturers are concerned about battery life. The base station - is not the same as the charging station, or even the phone, and its the base station that is the offender. The phome itself is receiving. Our small changes will take our levels from .87 (room high) and .227 (bed) down to almost nothing by simply turning off wireless at night. I'm going to ask if we can put it on a timer. DH is also going to move it to other end of room. Magnetic We had very low magnetic fields in our home - so that wasn't an issue. Thats more an effect from where you live, than what you have in your house. Electric Fields This engineer used to work for a company that made electric blankets (before that E engineer for Kodak)- and the info he got on that job in tyring to make safer electric blankets is how he got into doing this as a profession a decade ago. He doens't have Lyme, or any illness, so he's very unbiased. Some of the big things were very easy. Here is what we are doing for DS's bedroom and the resulting measeurments (measured as volt on skin) For DS's bed - Original measurement was 2.3 There was a power strip behind his bed area - about a foot to the side, or the bed on the ground. That had alarm clock plugged in. Unpluggin alarm clock from it did - almost nothing. Unplugging the powestrip - louvered the reading to 1.4 ! There are wires in all of our walls. Sheilding the ones only behind DS's bed - about a 7 foot buy 4 foot high area - (we did this by using a piece of fabric-like material that we grounded) lowered it to .25 - we did this with a little trial and error - and moving the fabric around. Most wires go up and over windows, but ours are down low - under the window to get to the next outlet. We are buying a graphite based paint - which will need to be grounded - to paint that section of the wall. He gives you a chart with all the different levels according to different sources for Magnetic, Electric and RF. For exmaple - Average Level in Homes for EF is .5 to 2.0, Average for RF is .00001 to .5 Gneral Public precaustionarey Levels - EF 1.0 (and .5 for sleep area) and RF is .01 EMF Hypersensitivity Advice - EF is .1 and RF is .001 or less. We won't be getting down to the Hypersentivity advice levels. Most of that data comes from Various reports he has compliles, thats why there is a range for some of the levels. There are others on his list - "Lowest levels linked to Cancer"," Bioinitiive report", and the "FCC guidelines") they come from industry studies and recommendations. He said the most convincing reports are not linking to causing cancers - but for those recovering from cancer. I guess its easier to do a study on that group. And the probably of full recovery is better if you lower your EMFs way down. The computer area and Game boy/playstaion area were not bad. We already have wired headphones - he said that is the way to go. And we have a some controller that is wireless and RF - we have it wired, but the wireless is also always emitting, so we are swiching to one that is only wired. He is in Santa Rosa CA. But he does work remotely - he can rent the meters and you can take your own measurements. And he does phone consultations. If you do it yourself, I'd recommend asking to rent some of the material (and a GROUND for it - does not work unless GROUNDED). You can't just paint or otherwise sheild a room - you may be increasing the fields - because the materials reflect back the waves. You can do the "netting" - the "sanctuary" it is called - and hang it around the bed. When you lay down - your body acts like an antenna - so the readings are very different than standing. Also, and metal bedframe or boxsrping is an antenna... I'm sure there are other people that do this. The medical buildings with MRIs and other types of medical and commercial buildings have need of this type of consultant. For us it was worth it for him to come out. I wish I had it done when the kids were there - it would have been GREAT. The meters are pretty cool - one emits a noise like a gieger counter and you have to hold it and lay down, stand up / move around - then see the effect on the readings with the material between you and the source. I'd say age 10 and up would appreciated it, but beware that it may take more time to answer kid questions, and you pay by the hour! He was in our house for 2.5 hours. We did one office, one bedroom, a play room (where the Xbox is) and a really quick sweep of the kitchen family/and my daughters room - but didn't do all the meters in the kitchen and daughters room because not near anything. (although the TV in family room has wireless speak that emits a bit). HIs website is emfcenter.com

I had an electric engineer come to our home and measure EMFs - Electtical, Magnetic and Radio Frequencies (RF is wireless). He said about half of his business is Lyme patients. Klinghardt is big on eliminating or lowering these fields, but I think they are in the news enough that everyone is at least aware that there may be some health issues associated with them at certain levers (but no one can determine the levels, or what issues they are definitely linked to). WHO release a cautionary statement on it last -spring(?). I did a very quick search to print some stuff for DH - who is REALLY the person I had the engineer coming for. I was pretty sure I cold easily implement with very little impact to our lives - what should be done as precaution - but DH is in the technology industry and is a geek that likes his gear, so calling in someone that he can talk to (since when I say the exact same thing it doesn't count for some reason!) was the way to go. Here is a study that came up when searching EMF and immune system - http://www.ncbi.nlm.nih.gov/pubmed/6611321 The levels tests - according to the abstract - are LOWER that the published safety standards. For RF - Wireless - Here's what we learned for our home - our wireless router - easiest solution is to turn it off at night. Also - we are moving it away from DS's shared wall with my DH's office. We are mainly wired, so we don't use the wireless much (DH switched this all back to wired after getting tiered of doing the tech support for printing and other issues for the 4 computers in the house). Move any phone base station to a room or area in the house that is at least 10 feet from where you often sit or sleep. The base station for Cordless home phone is always ON. It is always emitting signals. Unlike cell phones - because the cell phone manufacturers are concerned about battery life. The base station - is not the same as the charging station, or even the phone, and its the base station that is the offender. The phome itself is receiving. Our small changes will take our levels from .87 (room high) and .227 (bed) down to almost nothing by simply turning off wireless at night. I'm going to ask if we can put it on a timer. DH is also going to move it to other end of room. Magnetic We had very low magnetic fields in our home - so that wasn't an issue. Thats more an effect from where you live, than what you have in your house. Electric Fields This engineer used to work for a company that made electric blankets (before that E engineer for Kodak)- and the info he got on that job in tyring to make safer electric blankets is how he got into doing this as a profession a decade ago. He doens't have Lyme, or any illness, so he's very unbiased. Some of the big things were very easy. Here is what we are doing for DS's bedroom and the resulting measeurments (measured as volt on skin) For DS's bed - Original measurement was 2.3 There was a power strip behind his bed area - about a foot to the side, or the bed on the ground. That had alarm clock plugged in. Unpluggin alarm clock from it did - almost nothing. Unplugging the powestrip - louvered the reading to 1.4 ! There are wires in all of our walls. Sheilding the ones only behind DS's bed - about a 7 foot buy 4 foot high area - (we did this by using a piece of fabric-like material that we grounded) lowered it to .25 - we did this with a little trial and error - and moving the fabric around. Most wires go up and over windows, but ours are down low - under the window to get to the next outlet. We are buying a graphite based paint - which will need to be grounded - to paint that section of the wall. He gives you a chart with all the different levels according to different sources for Magnetic, Electric and RF. For exmaple - Average Level in Homes for EF is .5 to 2.0, Average for RF is .00001 to .5 Gneral Public precaustionarey Levels - EF 1.0 (and .5 for sleep area) and RF is .01 EMF Hypersensitivity Advice - EF is .1 and RF is .001 or less. We won't be getting down to the Hypersentivity advice levels. Most of that data comes from Various reports he has compliles, thats why there is a range for some of the levels. There are others on his list - "Lowest levels linked to Cancer"," Bioinitiive report", and the "FCC guidelines") they come from industry studies and recommendations. He said the most convincing reports are not linking to causing cancers - but for those recovering from cancer. I guess its easier to do a study on that group. And the probably of full recovery is better if you lower your EMFs way down. The computer area and Game boy/playstaion area were not bad. We already have wired headphones - he said that is the way to go. And we have a some controller that is wireless and RF - we have it wired, but the wireless is also always emitting, so we are swiching to one that is only wired. He is in Santa Rosa CA. But he does work remotely - he can rent the meters and you can take your own measurements. And he does phone consultations. If you do it yourself, I'd recommend asking to rent some of the material (and a GROUND for it - does not work unless GROUNDED). You can't just paint or otherwise sheild a room - you may be increasing the fields - because the materials reflect back the waves. You can do the "netting" - the "sanctuary" it is called - and hang it around the bed. When you lay down - your body acts like an antenna - so the readings are very different than standing. Also, and metal bedframe or boxsrping is an antenna... I'm sure there are other people that do this. The medical buildings with MRIs and other types of medical and commercial buildings have need of this type of consultant. For us it was worth it for him to come out. I wish I had it done when the kids were there - it would have been GREAT. The meters are pretty cool - one emits a noise like a gieger counter and you have to hold it and lay down, stand up / move around - then see the effect on the readings with the material between you and the source. I'd say age 10 and up would appreciated it, but beware that it may take more time to answer kid questions, and you pay by the hour! He was in our house for 2.5 hours. We did one office, one bedroom, a play room (where the Xbox is) and a really quick sweep of the kitchen family/and my daughters room - but didn't do all the meters in the kitchen and daughters room because not near anything. (although the TV in family room has wireless speak that emits a bit). HIs website is emfcenter.com

I'm so sorry Peg. It must be an very stressful time for all of you. I'm wishing you and Allie the best through the transition, and hope for you that it will ultimately prove to be a good change for you both. Best- Norcalmom

my son picks his gums too. It is UNCLEAR weather he picks them because of an OCD habit - or if there is some sensation due to infection or inflamation that makes him want to pick them. Low Nerutrophils can result in gum infections (common among those with certain diseases like AIDS). I like the idea of putting something on his fingers like Mayzoo suggested - we haven't tried that. Because no matter the reason for picking- open wounds in your mouth will cause a low level pandas flair for most kids. Strep, and other bacteria are high in the mouth, and its in your head..and for some reason researchers have found that mouth wounds illicit much more cytokines to be produced. HE could also have some sensations becasue he has molars or other teeth coming in. My son started this when his first 12 yr molar was errupting. It can take months and months for them all to come in. So for us - our periodontist did not think that my some could cause the type of inflammation along his gum lines buy just picking - he thought he had an infection of some other kind, and was picking because of the sensation. We did the mouth wash - didn't help. Did a deep cleaning - and DS LOVED it and found it very "relaxing". Must have had a very good hygienist! His teeth were clean...our regualr dentist, and the periodontics said his teeth were looking good. And the hygienist that did the deep clean found only a very small amount of plaque. Their theory is that you have to keep it really - REALLY clean, so the bacteria causing the infection are almost non-existent. DS also had to go on penicillin. And off his other antibiotics to do it - for 10 days. It helped. He had one part that was clearly infected (that he had probably been digging at). Its still a mystery. He still does it on occasion. We have been using the gum numbing cream (lydocaine for the mouth?) that the periodontist uses. He gave us a jar so that DS would keep his finger out of his mouth while healing. IT works for us - and he will ask for it on occassion - or if I see him pick we will put some in there. Orajel will work too - be not nearly as well. Just to complicate things more - stress can cause gum infections to flair! And - you can get herpes (cold sore version) inside your mouth on your gums. Although, for DS this was not what it was because his inflamation was only along the gum/tooth line. SO - for us - I still don't know what is causing it. OCD picking, or some type of cytokine relation to his molars or systemic immune thing. BUT - I was glad I took him in - because he DID have an infection from it!

I know the book is a little older - and I thought it wouldn't have relevant up to date info (or would be lacking) but what I liked was that its theories - have been around for a few years now, and from all I've read in the past 3 years - which is the more current stuff - the current stuff supports everything in the book. So, it isn't just one voice. I'm hearing the same thing from many sources now, giving it more credibility. Let us know how you like the !Epidemic of Absence"..can you say - vitual Book club? !

I read this over the long weekend. It was so good. Its a summary - written in English, not medical terms, uses A TON of research, statistics and analysis to talk about Autoimmune Disease. I've heard or read a lot of what was presented in it over the past 3 years in doing my own research, and it is so nice to see it all summarized and presented in a logical way, along with compelling personal stories that prove each point of the theory being presented. The title is The Autoimmune Epidemic by Donna Jackson Nakazawa I think the first time I saw this concept it was on a bootlegged presentation done by Cunningham at U of T. I said that pandas is a condition that is probably caused by one of several things PLUS a strep infection. The several things were - genetics, environment, or and existing condition that is affecting the immune system (like Lyme or CVID). The analogy that the author uses is a barrel. That is filled up over your lifetime - until you reach the brim. And when you reach the brim you add one drop - which does not lead to one drop spilling out - but rather a whole bunch of water cascading over. like the straw that broke the camels back. Everyone's immune system barrel is different. Some may be born with a barrel half full because they have a genetic disposition. Some may be a quarter full because of viruses or exposures they had in vitro. And over the course of time they add to their barrel. Until one day, one thing happens - that may have happened before without problems - maybe its an emotional trauma, or a physical trauma, or a virus - and that is the drop that causes the cascade over the sides. The book cites a lot of statistics.. It focuses on several of the "big ones" MS, Lupus, and R. Arthritis. Of course one of the statistics is that if you have one autoimmune disease - you are much more likely to get another. Which is part of the reason why I'm posting this. Since, I firmly believe our kids have autoimmune dysfunction. Unfortunely the lack of funds on not just pandas but autoimmune disease in general hampers us from figuring it out. Its also for those that can't understand (like my husband) why doctors just don't have a cut answer. It can take years from symptoms of even well know diseases to be determined which austoimmune disease you have. Its a relatively new area of medicine. IT really wasn't fully accepted that our bodies could attack themselves until 1965. I just ready a summary of history of autoimmunity on Pub Med. Eerily like pandas history!!! Some (jerk) name Elrich wrote a paper in 1900 that said "autoimmunity cannot happen". Around 1904, other doctors were fi were finding proof otherwise - but because of "Elrichs Docterine" it was all refuted and ignored. Until 1945 when there began an outpouring of work to prove autoimmunity, and challenge Elrich's doctrine. It still took another 20 years for it to become accepted widely . Sound familiar?? Theres a lot in there - gene information, viral studies, links to different chemical exposures and certain diseases... They are even finding protective genes, and ways to "empty" your barrel.

I registered on line, and it looks like the only thing that parents aren't invited to is the dinner. There is a post by Vickie (I think) that has a link to it, from a couple weeks ago. We'll have to have our own dinner I guess.

we need something like this... http://www.onclive.com/media/pdf/79a5b105a9bda419c0b419fb1f7afab0.pdf this is rare disease called Gaucher. Its very expensive to treat. And they have this groupd of insurance advocates around the country to asset you in making appeals when you are denied coverage...I found it when looking for some type of assistance with my appeal...which I am just starting...